A provocative, eye-opening history of the war on cancer, The Truth in Small Doses asks why we are losing this essential fight and charts a path forward.

OVER THE PAST HALF CENTURY, deaths from heart disease, stroke, and so many other killers have fallen dramatically. But cancer continues to kill with abandon. In 2013, despite a four-decade “war” against the disease that has cost hundreds of billions of dollars, more than 1.6 million Americans will be diagnosed with cancer and nearly six hundred thousand will die from it.

A decade ago, Clifton Leaf, a celebrated journalist and a cancer survivor himself, began to investigate why we had made such limited progress fighting this terrifying disease.

Timed to the book’s release he authored an opinion piece as the lead article in the July 14, 2013 New York Time’s esteemed Sunday Review section entitled, Do Clinical Trials Work?

I skimmed the lengthy piece so I won’t pretend any quality summation of his perspective but I do think he captures the moment we are in. The egregious cost of bringing any new treatment to market ($12 billion by one estimate) and the sobering failure rate of 95% of tested drugs not gaining approval, encourages drug companies to market each drug as ‘one size fits all’ cures. This correlates poorly with the huge advancement of these times – the realization of just how unique each person’s disease is and that personalized treatment is the way to go. Neither cancer treatment nor the drugs can be one-sized fits all.

Avistan is a great example of a drug marketed at great cost as a life-extender for many, many cancers. The drug costs a lot – so much that some countries like Britain have rejected its use multiple times because of the cost. Similarly many insurance carriers wont cover the cost. Proof of its effectiveness is pretty darn weak. Partially because it is a newer drug and you need time to prove that it keeps people alive longer and partially because, well, it might not be that effective; at least in the masses. There is evidence that in a small percentage of patients (I have heard as small as 3%) it could be a truly powerful life-extender. The focus should be in finding the 3% for this drug not in expending obscene sums of money to credential it as the standard of care for all patients. The drug is probably cost effective when matched with the right patient. But at that scale it might not seem cost effective to the drug company to bring to market. (Please note: Avistan is an angiogenesis inhibitor, a drug that slows the growth of new blood vessels to cancer tumors, hopefully killing the tumors. It is a drug I have been on for over a year and resisted starting it for the nine months prior despite knowing how ‘lucky’ I was to have insurance agree to pay for it. Avistan has hard side effects – surveyed women recently rated their quality of life on the drug as lowered. I would heartily concur. It makes us ache all over and reconfigures our nose’s interiors’, literally. And some of us fear it’s possible ‘blow-back’ where it may contain the cancer short term but when the cancer does come back, it is untamable.)

I bet you are starting to see the problem. Drug companies believe they can only realize profits (and remember their upper level pay scale!) if they mass market. Researchers meanwhile are now showing the breakthroughs in micro markets.

While the article casts a distressing assessment on clinical trials as a way to advance science and identify new protocols, it doesn’t disprove their value for people like me. When you have advanced, recurrent cancer of any type, you need to be on the cutting edge of treatments and or incredibly lucky. And lucky is not what most people with advanced cancer get noted as. Clinical trials have value. They give us, the patient, a shot at shopping for a better match for our situation.

It is important that patients consider what they need and how they can get it. Many patients assume that their medical team will figure this out for them but more likely, their medical team will offer them the standard of care of the moment. This may well include clinical trail options that have recently been announced or are offered at their institution but that is a poor way to match patients with trials. I have had excellent medical teamwork throughout my cancer journey and I still would not expect them to find the best trial for me – they work hard enough managing the best standard of care options for our dicey disease progression. This feels like reality amid the pressures of delivering medical care in 2013. It is the exception for a medical team to match patients up with the best trial options. It happens but when you are facing a terminal illness, such odds might not be good enough.

Given my personality, diagnosis fast led me to become a modified expert on ovarian cancer and cancer in general. My ‘expertise’ is regularly humbled in the face of other patients who seem to bring retention and some basic understanding of science to their own inquiry. Many of us cope by understanding what is going on. I have found peer-to-peer knowledge to be accurate and very helpful. Most cancers have websites that allow endless discussions on all aspects of dealing with the disease. (And yes, drug companies tend to fund them and, while not often, you will find a certain type of post gets disappeared quite fast – but that is another story.)

The point of this post is to encourage you to read Leaf’s article and book but not to get stuck in what is wrong. You don’t need to fix it, although you should consider helping out by becoming an advocate for improved practises. But what you should really, really do is know that you and your support team (best friends, lovers, family, co-workers) need to drive finding the best treatment options for your cancer, especially after you have recurred. There are tools to make this easier.

By almost any measure, clinicaltrials.gov, the website administered by the National Institutes of Health, sets the standard for providing public access to comprehensive information from around the world about research on experimental treatments for an array of diseases and conditions. Yet, despite more than a decade of efforts to improve its functionality, simplify access to its database and synthesize its information, navigating the site can be a challenge.

That’s why a Florida doctor teamed with healthcare professionals from dozens of medical centers, research institutes and medical schools to develop MyClinicalTrialLocator. MyClinicalTrialLocator.com, a site designed to make searching for a trial easier.

Designed for patients as well as medical professionals, the site not only utilizes the government database for clinical trial information but also includes important updates from medical centers conducting the research and enables users to search for trials anywhere in the world. In addition to studies of drugs and medications, the site also details studies of medical devices, procedures and interventions, and lifestyle factors, such as nutrition, diet and exercise. Users simply enter the name of their condition, their location and the distance they are willing to travel. Listings provide a plain-language summary of the trial, including recruitment information, eligibility criteria and contact details.

The service is free, and access is open to any user, though visitors are encouraged to establish an account so that they can save their searches and receive customized email updates and automatic notifications based on their search criteria. To learn more, visit MyClinicalTrialLocator.com.

Welcome to a space dedicated to the process of livingly dying – staring at imminent mortality and yet residing in the world of the living. More and more of us are finding the words terminally ill and chronic illness co-mingle. We are living longer and better despite a dire diagnosis/prognosis. But the path is not easy.

We bounce between denial, deep despair, and sheer optimism. All the while, many of us face treatment regimes that whittle us down and a current culture in the United States unfamiliar with sitting with death and dying. These writings will be of most value for:

a. people navigating the balance of living when told you are dying

b. people pursuing creative approaches, especially those stimulating our immune systems to fight back the diseases trampling us

c. people interested in witnessing one person living each day with terminal illness.

Livingly Dying Essays, Clinical Trial & Creative Approaches, and Medical Industrial Complex Woes make up the three categories on the lower right column of the front page allowing you easy access to content that most interests you. To receive new posts click the follow button in the upper right column. I share my journey to support collective efforts to live well while dying. I am feeling my way out loud. Thank you for joining me. Comments are always welcome, in fact, they cheer on the process. If you scroll below this welcome, you will find the running narrative with most current post on top.